Question about how to take care of GBS patient

    • Anonymous
      October 24, 2006 at 6:28 am

      Hi, I’m a viewer from Taiwan and sorry for my word-bound English. My relative just had GBS last weekend and she is in hospital now.

      I want to know how to take care of her since I can’t find this kind of information on web. Any knowledge and experience of taking care are sincerely welcome.

      Thanks for the help very much.

    • Anonymous
      October 24, 2006 at 11:36 am

      hi tyruschen & welcome,

      your english is fine. it would help if you told us as much about her as you know. symptoms, medical procedures done, medication taken, present status, is she in pain, etc. gbs has so many faces. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      October 25, 2006 at 5:10 am

      [QUOTE=gene]hi tyruschen & welcome,

      your english is fine. it would help if you told us as much about her as you know. symptoms, medical procedures done, medication taken, present status, is she in pain, etc. gbs has so many faces. take care. be well.

      gene gbs 8-99
      in numbers there is strength[/QUOTE]
      Thanks a lot for the reply.

      My cousin got a cold early this month and kept coughing for weeks. Last Friday she started to feel numb in her arms and mouth. She went to a hosital and doctor said those were symptoms of influenza. Last Sunday about AM 4:00 my brother-in-law (her husband) found she was in a very bad way so he took her to emergency.

      After hospitalized her condition became worse, when being took to emergency she could still walk, eat, go to bathroom by herself, etc. I visited her this Monday and she could only move her limbs a little bit (like waving hand) and must breath by inspirator and was put on a drip.

      My brother-in-law told me the doctor has examined bone marrow aspiration report and performed plasma exchange for the first time. (He’ll do it today and on Friday again)

      I’ll visit her tonight, any knowledge and experience are very appreciated. Thanks again.

      Tyrus Chen

    • Anonymous
      October 25, 2006 at 11:27 am

      If they are starting the plasme exchange that is a good thing and hopefully she will start feeling better soon. There is not much known about GBS and this has been one of the most educational sites for me to talk to others who have been through the same things.

      Anyways, as far as caring for your cousin… Just being there for her and helping her in any way you can. I had family with me all the time in the hospital and my mom sat with me while I had all of my plasma exchanges and gave me something to drink. I got really thirsty when I had plasma exchange done. If she is able to eat on her own then being there to feed her (be sure to cut things up very small like feeding a child to avoid risks of choking and also she will probably get very tired while eating and chewing anything bigger than very small child like pieces is tiring). I used to take a couple of naps during my lunch because I got so tired. But having someone there offering to feed me was the best thing for me. She is not going to have much of an appetite but will still need someone to feed her as she needs the food for energy. Soups were some of the best things because I couldnt chew things like chicken or hamburgers (even without the bun). I ate a lot of soups and hotdogs (without the bun and cut up very small).

      Also, your cousin will just want someone there with her to read the paper to her, watch a movie with her, talk, or anything else. My mom would brush my hair for me which didnt matter to me at the time but looking back now it was really nice and maybe it did help me to feel better. I wasnt able to get out of bed for a few days so my mom brought me my toothbrush and a cup of water to rinse the brush and another cup to spit in… that was great to be able to do that from bed. Also if she cant get up she will need someone to bathe her, using washcloths while she is in bed. Once she can make it to the shower she will need someone to still bathe her maybe for a while while she sits there. My sister would also come in and wash my TEDs for me (those tight stockings they put on you in the hosptial to help prevent blood clots). It was nice that people were willing to be there for me and help me out with all these little things.

      The main thing is just being there and letting her know that you are there. Helping out any way you can and offer to do things for her. It is very scary going through though this and just hoping you get better and having someone there for you is probably the best thing so you dont feel quite as alone.

    • Anonymous
      October 25, 2006 at 7:55 pm

      hi tyrus,

      as long as she can communicate, she’ll be able to let you know what she needs. gbs stands for Get Better Slowly. so she should rest/sleep as much as her body tells her to. it is the fastest road to recovery. neurontin if she is in pain. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      October 25, 2006 at 10:55 pm

      Thanks for all the replies, gene & doby.

      I visited the hospital yesterday and she was just treated with second plasma exchange.

      Now she can barely swallow so the doctor put something like cannula and drip of norm-saline (doc said it’ll prevent the antibody to affect brainstem) on her. Her husband and son were on shift to be with and take care of her. She could still talk and move a little, but her stamina seemed worse.

      Hope she’ll be full recovered asap….

    • Anonymous
      October 26, 2006 at 1:09 am

      Tell your friend about this site and maybe she has some questions for us too! Each case is different and how it effects the patient. It does get worse before it gets better and the plasma is not a cure but will stop the progress and turn the immune system around so it starts healing slowly.

      Help her with personal things. Read her mail to her and have friends send her mail. Her visit to the hospital should contain some rehab also. The hospital will get her on a routine. That will help her get rest. Let her get all the rest she can. Tell her to listen to her body. She may be sensitive to light and sounds. Vision might be effected. Weight loss is normal. Find a good book and read a chapter to her when you visit. Write letters for her so she can keep in touch and let friends know how she feels. It is nice that her family can do things for her. Offer to do things that they might not feel comfortable doing. Like a manicure or pedicure. Laundry or shopping for things that she might need. Anything you can offer that will take some stress off of her family members will also make her feel better. Our caregivers have to take care of themselves too. We rely on them for years. There is always little things we need help with.

      Don’t ask too many questions. Even communication is exhausting to the GBSer. Sometimes just being there for moral support when she is being moved to another room or having tests run. I liked back rubs and my skin was very dry so I liked lotions put on my hands or just my fingers straightened out. Others could not stand to be touched it was too painful. Communicate with your friend….that is best!

      Tell her we are here for her and hope to see a message from her soon!

    • Anonymous
      October 26, 2006 at 2:51 am

      Thanks a lot for your support, LadyKITUSA.

      I got another question about GBS. After searching the web I found some called it AIDP and said they are the same. Some said GBS is one symptom in AIDP category. What’s the relationship or any difference between them? Thanks.

    • Anonymous
      October 26, 2006 at 9:18 am

      Hi there,

      AIDP = GBS = Acute Inflammatory Demylenating Polyradiculoneuropathy

      CIDP= Chronic Inflammatory Demylenating Polyradiculoneuropathy

      So AIDP is just another name for GBS.


    • Anonymous
      October 26, 2006 at 9:52 am


      the plasmapherrsis is working if she stops declining. the recovery will follow later. all these varients of gbs are treated the same especially at the beginning. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      October 26, 2006 at 10:03 am


      Keep reminding your cousin that you love her, that she is important to your family, that she Will get better and that you will continue to be there for her during her improvements and recovery. As no one can tell you how much recovery she will have, it is important to keep encouraging her daily. If you keep a diary for her, then she will be able to read about her improvements when she becomes discouraged. I wish your cousin well.

      Keep returning with your questions as there’s always someone here that “knows” from personal experience.

    • Anonymous
      October 26, 2006 at 11:31 am

      You may not see increases and she may not either, but she may still get a little worse or may stay the same for a while. If she is lucky, the treatments will work and I have heard some people actually walk out of the hospital after they finish their treatments. Other people though take longer to recover and dont walk out on their own even after rehab (like me and many others around here) but we are still getting better. It is a scary time and nobody knows much about it, when it will get better and how fast it will get better. A good site for information is the Mayo Clinic. They even have a video of the plasma exchange procedure if you are interested.


    • Anonymous
      October 26, 2006 at 1:45 pm

      Your cousin is very lucky to have you. Your encourgement, smiles, and hugs will help see her through. I was very glad the doctors began plasma pheresis. I’ve had 106 of these; they work miracles. IVIG did not work for me and actually made my liver upset. It also gave me tremendous headaches.

      The number one thing that blessed me while I was in the hospital was when people looked after my family. There wasn’t much they could do for me, other than pray and offer encourgement. However, some friends from church provided dinners for my family (they continued for two months when I arrived home), rides to and from school for my children, play dates to help my children get the fact that mom was in the hospital, etc. off of their minds. Anything you do for your cousin’s son, as well as husband, will bless her greatly.

      Take Care.

    • Anonymous
      October 27, 2006 at 1:57 am

      Thanks a lot for all your kindness and information. They’re very warming and helpful.

      My brother and I visit her as much as we can, and her husband and son will keep on staying with her in hospital. Hope all your help and these efforts will make her feel better and recover soonerm and all people suffer from this symptom will be fully healthy again.

    • Anonymous
      November 7, 2006 at 1:31 am


      After two weeks hospitalized with intensive care and plasma exchange treatment (4 times), my cousin is much much better now and began her physical therapy session last Friday. The best news is: Maybe she can leave hospital next week. Her recovering rate is amazing.

      I visit her last Saturday and she told me since recovering, she had some kind of insomnia and couldn’t sleep at all several days. Is it a side effect of GBS? (she never had insomnia before)

      I want to say thank you all again for not only advices but so much support, it help us a lot these days.

    • Anonymous
      November 7, 2006 at 10:56 am


      That is such good news, please tell her hello for me and I am happy to hear she is in rehab. I hope she comes and joins us her when she is able and that you also continue to visit us. Take care.


    • Anonymous
      November 7, 2006 at 11:42 am

      Thats great news! Dont be discouraged if her therapy begins to level off. Some people continue with great success until they are back to normal and some will level off and then gradually get better. But sounds like she responded to the treatments quickly so that is definatly good news. And as Jerimy said, have her drop by and join once she is out of the hospital.